I have half a face paralyzed and I am learning to smile again
June morning of 2003 Saturday. Seven in the morning. The early sun shines through the window. I recently woke up and try to brush my teeth. Standard morning procedure, but something is not as usual. I can not understand what's the matter, water flows out of my mouth, flowing down my neck. I look up and do not recognize myself - in the mirror is someone's distorted mask. The left side of the face is still hanging, not responding to my efforts. I can not squeeze lips, raise an eyebrow, the corner of a mouth looks down. Convulsive attempts to revive the muscles, but no response - half of my face seemed to be lifeless. Strange, but I remain relatively calm - it seems to me that this is some kind of misunderstanding, because I didn’t hurt anything, just last night I was completely healthy. Soon everything will pass, you just need to relax and go to the doctor.
The fact that my illness in the English-language literature is called "Bell's palsy", I learned myself a few years later from Wikipedia. In Russia, the terms “neuritis of the facial nerve” and “paresis of the facial nerve” are more common. The reasons for which it develops are still unknown. Diabetes mellitus is mentioned as a risk factor, and a number of authors associate this disease with Epstein-Barr virus. But you can simply, without having any predisposition, once fall asleep to a healthy person, but wake up with a fixed face. This happens on average with four people out of ten thousand, so it is believed that paresis of the facial nerve is a common disease. Interesting fact: although it strikes men and women equally often, pregnant women have a three-fold chance of facing Bell's paralysis. There is a version that this may be due to tissue edema, which during pregnancy is not uncommon.
Summer Saturday morning in the city clinic is deserted. Having missed the patient with renal colic, I enter the office of the duty therapist and sit on the oil-covered chair. "What happened?" - In spite of me, a middle-aged doctor asks me in a white robe thrown over his shoulders. Looking up, the doctor is stuck in my huge belly - in a month I have to give birth. I am 22 years old, I study at the institute on the fifth year, I plan to live happily ever after, give birth to a daughter and never get sick. “The muscles of the left half of my face do not move,” I say with difficulty, trying to adapt to new conditions. The voice sounds strange. It is difficult to speak. "Why did you take it?" - I begin to feel the familiar condescending attitude towards a pregnant woman: worries about the child, does not work, and so goes to the doctors. "I can't smile," I reply. “The main thing is not to worry,” says the therapist in a soothing voice. “Make the burdock root, squeeze it well and make compresses twice a day.” I'm trying to say something in response, I’m not good at it, and then the doctor’s eyes suddenly become tense: "My God! Yes, you have the same ... Urgently to a neurologist - keep the referral!"
I go down to the subway - a neurologist works on Saturday only in one clinic for the whole district, and I still have to get to it. The usual subway ride now seems simple. The sound of an approaching train is unbearable, painfully, loud, you have to clamp your left ear with your hand. In addition to the facial muscles, Bell's palsy also affects the ear: hypersensitivity to sounds, hyperacusia, develops. This happens because the facial nerve "nourishes" the middle ear. Also often disappear taste.
A gray-haired neurologist is kind to me, but confused. He does not know how to treat pregnant women. “You can’t do anything,” he says slowly, giving himself time to think. “You know what? We’ll do acupuncture, and you’ll still go to magnetic therapy every day.” He is kind to me and, sticking needles into a corner of my mouth, he almost cries and calls me "my sword-swallower". “When will you give birth?” He asks. “The most important thing right now is not to harm the main thing. Do you understand what I mean?” I am lying on the massage table, needles are sticking out of my face, and I, of course, understand that all the treatments I have been prescribed do not differ in terms of the possible therapeutic effect from placebo.
On the way home, I remember that I did not eat breakfast, and I buy myself a bar of muesli. I go to the subway and try to chew on an absolutely tasteless, sticky mass. Nothing happens. I understand that eating food without feeling taste is almost impossible.
My daughter never saw my real face. By the time of her birth, the muscles did not start moving
Usually, in cases of facial paralysis, a course of steroid hormone injections, prednisone or corticosteroids, is prescribed. If you begin hormone therapy in the first three days, the chances of successful restoration of the functions of the facial nerve increase. This is due to their ability to suppress inflammatory processes. Of course, hormones are not prescribed to pregnant women. There were also attempts to use antiviral drugs, but clinical trials have shown their ineffectiveness. All other means, including massage and physiotherapy, unfortunately, do not have proven effectiveness. This means that maybe they will somehow help, but no one knows for sure.
In most cases, the paresis of the facial nerve completely goes away by itself, but there are 20% of people who do not have recovery at all or are incomplete. As a rule, the earlier it began, the better the result is worth the wait. If there is no change within six months, then hope is lost. At the same time, there are practically no ways to somehow influence the course of events - basically you just need to wait.
My daughter was born a month after that morning. She never saw my real face. By the time she was born, the muscles did not start moving. Only a few months later, small movements gradually began to return: I could smile a little. It was not a smile - rather a hint of it. It's hard enough not to smile at your child. In a calm state, the face ceased to be so provocatively asymmetrical: the corner of the lips rose, returning to a position close to the "pre-morbid", the face no longer had such a sad look.
Nevertheless, I could no longer show exactly the emotions that I experienced. Instead, the face had a complete mess of movements, as if from a huge pile of nerve wires, someone pulled out random ones and changed them in places. I wanted to smile, but besides the smile, I also closed my eyes, and in the left ear there was a ringing sound. I tried to chew, and tears rolled out of my eyes. Squinted - lips twisted in the grimace of pain. The muscles did not move quite involuntarily, but not at all in the way that I wanted.
If a full recovery does not occur spontaneously within two to three weeks, then the muscles gradually “forget” how to move properly, and weaken. There are synkinesis - friendly movements: the nerves begin to innervate not only those muscles that need, but also "alien" ones that perform completely different functions. There is a number of pathological conditions, which often have beautiful names: "crocodile syndrome" manifests when tears flow from the eyes while eating, and "eyelash syndrome" - the impossibility of closing the eyes.
My daughter is one year old, and we rested in the Crimea, lived in tents near Koktebel. Once we walked along the embankment, and the summer sun shone in my eyes, and my daughter sat behind her back in a special backpack and chatted with her legs. Some kind-hearted woman passing by seemed to notice that my eyes were watering from the bright sun: "Are you crying? What's the matter with you?" "Thank you, I'm fine, I'm not crying," - I tried to smile, to finally dispel doubts. But her face became even more disturbing: "Daughter, what happened ?!" I barely managed to convince the passerby that everything was fine with me, which is not surprising - instead of a smile on my face, an expression of pain and a kind of wry grin, and tears flow more and more. A few such cases - and somehow instinctively you begin to avoid communication, closing yourself in deeper and deeper.
Facial expression is a huge part of interpersonal communication. The face reflects our emotions, and if it does it wrong, then the original emotions themselves are distorted by the feedback loop. In other words, if you cannot smile, then it becomes difficult for you to feel joy. Vicious circle. Dissatisfaction with oneself is growing and can lead to depression. So in general, a small physical problem can develop into a serious and difficult to treat disease.
Over time, I consciously began to limit the expression of my emotions — I still couldn’t display what I feel. It was my habit to turn around to the camera lens: when two face halves are not visible at the same time, the asymmetry is not so noticeable. I got used to using cosmetics a little: I didn’t want to draw too much attention to my features. She got used to not smiling when they look at me (I know that my smile does not look the way I want) and automatically cover part of the face with my hand if I do it. People who do not know me personally and see only in photographs often ask why I am always so serious. Well, I only manage a very light semi-smash. Yes, such as the Mona Lisa. By the way, according to one of the versions, the model, posing for Leonardo da Vinci, had a paresis of the facial nerve - hence the expression of mystery on her face.
Over time, I consciously began to limit the expression of my emotions — I still could not display what I feel.
The rescue of a drowning man is the work of the drowning man himself. Then, in 2003, no one told me that there are ways to reduce the severity of asymmetry, to compensate for unnecessary movements. Nobody will offer you such treatment in state clinics - it is believed that this is a luxury, the fight against cosmetic defects. One of these methods is botox injections according to a complex pattern. Botox has an amazing history, he came to cosmetology from neurology. The drug weakens or blocks the "extra" movement, and facial expressions in a patient with a paresis of the facial nerve becomes more symmetrical. There are very few neurologists who are proficient in this technique, but they definitely exist in Moscow. The effect of a single course of injection lasts about six months. To maintain this condition, courses must be repeated regularly. A few years ago I tried botox on myself. Surrounding people say that the effect was noticeable, but the price stopped me from regular use. I decided to look for other methods.
Another hope is neuromuscular rehabilitation. According to conventional wisdom, synkinesia is forever, and if they are already formed, it is impossible to get rid of them. But some experts believe that the established pathological connections between nerves and muscles are not irreversible and can be reprogrammed. They view synkinesis as bad habits, as an irregular gait or sitting in an uneven position. You can’t just undo it, but you can retrain. The process is long, takes years and requires a lot of work of the patient. Unfortunately, there are very few clinics where such restoration is carried out in the world.
I have long been accustomed to my condition and even see a number of advantages in it. For example, I have no wrinkles on my forehead, because I physically can't raise my eyebrows. Cosmetic injections of Botox will definitely not come in handy for me - one can say I have Botox for free and for life. You can take pictures from different sides, and the faces in these photos will be different. In healthy people, faces are also asymmetric, but this is not so pronounced. But still, I plan to attend neuromuscular reprogramming sessions and now I am looking for a doctor and a clinic that will accept me. I'd like to learn again not to be afraid of a wide smile.
Photo: personal archive
